Gardengirl and other participants: thank you all for your thoughts and sharing.
I am in a similar position as Gardengirl, although I was more recently diagnosed and had persistent anemia as well as focal lesions. We are meeting with the local transplant team in a couple of days for a "heart-to-heart" discussion and review of our options.
I will admit that this is a difficult, almost agonizing decision. The cost, physical trauma, and potential emotional pain of a transplant in the absence of clear data supporting it, versus my current RVD treatment (which seems to be working well), is the real fulcrum of that decision.
The other side of that teeter-totter is the possibility of hopefully at least a year or more off of meds and higher quality of life before relapse. Of course, RVD by itself is not a picnic, but there is also a chance for maintenance in another course or two and then possibly time off of meds also.
So, Gardengirl, I feel your pain. I don't know if it helps to think along the dimensions of cost-benefit that I've outlined here, but at least I would want you to know you are not alone.
My best to you in your decision.
Forums
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dranton - Name: Anton Tolman
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: August, 2014
- Age at diagnosis: 51
Re: Stem cell transplant for "early multiple myeloma"?
So 4 months later and I still don't know what to do. Just wondering if anyone else with early myeloma, no CRAB, and normal cytogenetics has decided to pursue an SCT. The clock is ticking for me, since the best time with regards to my family is in the fall (have to work around the kid's sports!).
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gardengirl - Name: gardengirl
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Nov. 2013
- Age at diagnosis: 47
Re: Stem cell transplant for "early multiple myeloma"?
Gardengirl:
Yes, four months have gone by fairly quickly, seems to me. I was diagnosed fairly early (52 years old), and I did have anemia from the original CRAB criteria and a fairly low M-spike. My cytogenetics put me into the standard risk category.
After we met with the transplant team, I decided to go ahead with the auto SCT. I've been out of the hospital now for almost 9 weeks. Overall, it went pretty well – no infections, no significant complications (other than going stir crazy). I did have some bad days there due to what they called "engraftment syndrome" when I was getting transfusions and high fever, but that didn't last very long. It is still early to tell, but I am hoping that I get a decent amount of time in remission before we have to get back into treatment.
Everyone might have a different experience with SCT, but my transplant team was on top of everything, was very proactive, was open to discussions and listening to my input, and was very responsive to my needs and issues. I think that really makes a difference.
To be honest, because I am a psychologist, I was also swayed by a recent study that did a decent comparison to modern treatments with no SCT and with SCT. Those results indicated that those who went through SCT generally had longer remission times. As one of the doctors on my SCT team said, "What we are doing here is buying time." I agree with that – and it is a worthy goal.
With each month that passes, new treatments may arise and are tested and coming to market. I think the most realistic goal right now, IMHO, is to make multiple myeloma a chronic disease rather than an acute deadly one. So that affected my decision-making; that, and the attitude and experience of my transplant team.
I hope this is helpful. I wish you the best in your difficult choice.
Yes, four months have gone by fairly quickly, seems to me. I was diagnosed fairly early (52 years old), and I did have anemia from the original CRAB criteria and a fairly low M-spike. My cytogenetics put me into the standard risk category.
After we met with the transplant team, I decided to go ahead with the auto SCT. I've been out of the hospital now for almost 9 weeks. Overall, it went pretty well – no infections, no significant complications (other than going stir crazy). I did have some bad days there due to what they called "engraftment syndrome" when I was getting transfusions and high fever, but that didn't last very long. It is still early to tell, but I am hoping that I get a decent amount of time in remission before we have to get back into treatment.
Everyone might have a different experience with SCT, but my transplant team was on top of everything, was very proactive, was open to discussions and listening to my input, and was very responsive to my needs and issues. I think that really makes a difference.
To be honest, because I am a psychologist, I was also swayed by a recent study that did a decent comparison to modern treatments with no SCT and with SCT. Those results indicated that those who went through SCT generally had longer remission times. As one of the doctors on my SCT team said, "What we are doing here is buying time." I agree with that – and it is a worthy goal.
With each month that passes, new treatments may arise and are tested and coming to market. I think the most realistic goal right now, IMHO, is to make multiple myeloma a chronic disease rather than an acute deadly one. So that affected my decision-making; that, and the attitude and experience of my transplant team.
I hope this is helpful. I wish you the best in your difficult choice.
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dranton - Name: Anton Tolman
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: August, 2014
- Age at diagnosis: 51
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